The outcomes, burdens and experiences of patients receiving immunotherapy for cancer

<p>Immunotherapy (IO) is a novel treatment for cancer, offering improved clinical outcomes in terms of progression free survival intervals and a reduced side effect profile for many patients. To date, health-related quality of life (HRQoL) of IO patients has been poorly investigated, with inad...

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Main Author: Wiltshire, R
Other Authors: Middleton, M
Format: Thesis
Language:English
Published: 2023
Subjects:
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author Wiltshire, R
author2 Middleton, M
author_facet Middleton, M
Wiltshire, R
author_sort Wiltshire, R
collection OXFORD
description <p>Immunotherapy (IO) is a novel treatment for cancer, offering improved clinical outcomes in terms of progression free survival intervals and a reduced side effect profile for many patients. To date, health-related quality of life (HRQoL) of IO patients has been poorly investigated, with inadequate reporting, and existing measures are not validated in this population.</p> <br> <p>The aim of this research was to investigate HRQoL outcomes, burdens and experiences of patients receiving IO for their cancer. A systematic review investigated the validity of existing measures, and a qualitative study explored the outcomes, burdens and experiences of IO patients. A PROM, a burden of treatment measure and a patient experience questionnaire were developed. The measures are named the Oxford Cancer Immunotherapy Quality of Life measure (OxCI QoL) and the Oxford Cancer Immunotherapy Burden of Treatment measure (OxCI BT), the patient experience questionnaire is the Oxford Cancer Immunotherapy Patient Experience Questionnaire (OxCI PEQ). The measures and questionnaire were developed following in-depth qualitative interviews with participants who had had IO in the previous 3 months or were receiving IO for their cancer and refined using cognitive interviewing and input from experts. The OxCI QoL and OxCI BT were additionally subjected to a translatability assessment to evaluate their linguistic and cultural translatability. A validation survey was conducted to refine and validate the measures, whereby patients who had received IO in the previous 3 months or were receiving IO completed the OxCI QoL and OxCI BT as part of a postal survey. A further cross-sectional survey was then performed, utilising the OxCI QoL, OxCI BT and OxCI PEQ to report the HRQoL outcomes, burden and experiences of the sampled IO population and the relationships between outcomes, burden and experiences.</p> <br> <p>The participants’ ability to live a normal life was most effected by IO treatment, followed by emotional wellbeing and IO side effects and symptoms. Correlations between outcomes, burdens and experiences, indicating that participants with worse experiences of healthcare, and greater treatment burden also had poorer quality of life.</p> <br> <p>A reliable and valid IO-specific patient-reported outcome measure, burden of treatment measure and patient experience questionnaire have been developed as part of this thesis. The OxCI QoL and OxCI BT require further testing in larger samples to fully validate them for use in clinical practice and research studies, including clinical trials, to assess HRQoL and treatment burden in the IO population.</p>
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spelling oxford-uuid:0e642f41-6c0a-4f7a-ac35-ab90d3217ece2025-01-24T09:52:46ZThe outcomes, burdens and experiences of patients receiving immunotherapy for cancerThesishttp://purl.org/coar/resource_type/c_db06uuid:0e642f41-6c0a-4f7a-ac35-ab90d3217ecePatient experienceQuality of lifeBurden of treatmentCancer--immunotherapyOncologyEnglishHyrax Deposit2023Wiltshire, RMiddleton, MPeters, M<p>Immunotherapy (IO) is a novel treatment for cancer, offering improved clinical outcomes in terms of progression free survival intervals and a reduced side effect profile for many patients. To date, health-related quality of life (HRQoL) of IO patients has been poorly investigated, with inadequate reporting, and existing measures are not validated in this population.</p> <br> <p>The aim of this research was to investigate HRQoL outcomes, burdens and experiences of patients receiving IO for their cancer. A systematic review investigated the validity of existing measures, and a qualitative study explored the outcomes, burdens and experiences of IO patients. A PROM, a burden of treatment measure and a patient experience questionnaire were developed. The measures are named the Oxford Cancer Immunotherapy Quality of Life measure (OxCI QoL) and the Oxford Cancer Immunotherapy Burden of Treatment measure (OxCI BT), the patient experience questionnaire is the Oxford Cancer Immunotherapy Patient Experience Questionnaire (OxCI PEQ). The measures and questionnaire were developed following in-depth qualitative interviews with participants who had had IO in the previous 3 months or were receiving IO for their cancer and refined using cognitive interviewing and input from experts. The OxCI QoL and OxCI BT were additionally subjected to a translatability assessment to evaluate their linguistic and cultural translatability. A validation survey was conducted to refine and validate the measures, whereby patients who had received IO in the previous 3 months or were receiving IO completed the OxCI QoL and OxCI BT as part of a postal survey. A further cross-sectional survey was then performed, utilising the OxCI QoL, OxCI BT and OxCI PEQ to report the HRQoL outcomes, burden and experiences of the sampled IO population and the relationships between outcomes, burden and experiences.</p> <br> <p>The participants’ ability to live a normal life was most effected by IO treatment, followed by emotional wellbeing and IO side effects and symptoms. Correlations between outcomes, burdens and experiences, indicating that participants with worse experiences of healthcare, and greater treatment burden also had poorer quality of life.</p> <br> <p>A reliable and valid IO-specific patient-reported outcome measure, burden of treatment measure and patient experience questionnaire have been developed as part of this thesis. The OxCI QoL and OxCI BT require further testing in larger samples to fully validate them for use in clinical practice and research studies, including clinical trials, to assess HRQoL and treatment burden in the IO population.</p>
spellingShingle Patient experience
Quality of life
Burden of treatment
Cancer--immunotherapy
Oncology
Wiltshire, R
The outcomes, burdens and experiences of patients receiving immunotherapy for cancer
title The outcomes, burdens and experiences of patients receiving immunotherapy for cancer
title_full The outcomes, burdens and experiences of patients receiving immunotherapy for cancer
title_fullStr The outcomes, burdens and experiences of patients receiving immunotherapy for cancer
title_full_unstemmed The outcomes, burdens and experiences of patients receiving immunotherapy for cancer
title_short The outcomes, burdens and experiences of patients receiving immunotherapy for cancer
title_sort outcomes burdens and experiences of patients receiving immunotherapy for cancer
topic Patient experience
Quality of life
Burden of treatment
Cancer--immunotherapy
Oncology
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